Tag: Epilepsy Awareness

If I could take away the needle pricks, the million question that never change—name, birthday, address, how long have you been experiencing seizures—I would.

If I could crawl in the hospital bed and stay there for a month so that you could sleep in your own bed, listening to your youngest two chattering through the wall, I would.

If I could drag the I.V. pole and the portable electrodes monitor with me every time I went to the bathroom, I would. I’d offer my own hair if I could. If they’d take mine instead, I would.

If I could make it all go away, I would. Because that’s what mothers do.

But sometimes, as much as we want to, we can’t make it go away. So we bury our guilt, our fears, our feelings of failure because we can’t make it better so you won’t see. Moms are supposed to make it all better. That’s what mothers do.

Before you were his wife or their mother, you were my daughter. From the moment I learned of your existence, I worried about you. After you were born, I worried every time you were out of sight. And tomorrow the surgeon will have you for six hours and you’ll be out of my sight that entire time. When they tell us afterward everything went fine and you can see her in an hour or two, or however they chose to quantify the time—that time—the time when they won’t let me hold your hand, or stroke your cheek, or hug you—will be the hardest hours I’ve ever lived.

But I’ll pace the hospital floor holding my breath, being strong, keeping the faith. Because that’s what mothers do.

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I’m angry. I’m worried. And I want to scream at someone, anyone. I want to shake my fists in the air and shout “FUCK YOU, EPILEPSY.” I want to point a finger and say it’s your fault, or maybe yours, or maybe you over there. But there’s no one to blame, not really. It’s just one of those things. Yeah. Fuck you.

What is one of those things? It’s watching your daughter’s husband carry her like an infant into the house, bearing her total weight in his arms, begging her to “hang on.”

It’s watching her three year-old squat down in front of her, staring at his unresponsive mommy, then look up and at me and his daddy and say, “Mommy dead?”

It’s watching Ava outside on the trampoline, not jumping, just sitting there with tears in her eyes, scared to go in the house.

It’s seeing your daughter finally come out of a grand mal in the Emergency Room, crying, and the first thing she says in a tiny, strained voice is “Ava’s party—I need to go to Ava’s party.”

It’s Ava, in her classroom at school on the day of her Easter party, worried why her mommy isn’t there yet.

It’s Landon being roused out of bed by his dad to come lay beside his mom when Allen leaves for work. Call 911, he’s instructed, if she starts seizing. He’s only 11. It’s a heavy burden for any kid but he’s the oldest.

It’s Ireland being clingy to mommy after a brief stay in the hospital.

It’s seeing pictures of Landon with his best friend and his family snowboarding and wishing it was you, his own family, that he was there with.

It’s having to ask for help from neighbors to get your kids back and forth to school, or can they hitch a ride with so-and-so to church, or maybe to the ballgame.

It’s looking into special phones that a four year-old like Ivy can learn to use to call 911 with a recorded message that says “mother with grand mal seizure, small children in house.”

It’s organizing the daily round of pills. She’s only 31.

It’s the unspoken fear of going anywhere, the what if...

It’s a disease, a condition, a whatever-the-hell-you-want-to-call-it. And it’s a thief. It’s robbing my daughter of memories she’ll never get back; it’s robbing her kids of mommy moments.

And that pisses me off. Fuck you, epilepsy. You’ve knocked us down a couple times, but we get right back up. And we’ll keep getting right back up because we will not be your victim. You will not win this war.